There are two twelve-year-old girls in Unit One. They share the room across from Benjy's, and they both look about fifteen. They are the friendliest young things you'll ever see.
Every time one of them passes his open door she sings, "Hi, Benjy!" At bedtime they poke their heads in and wish him a good night. They are a couple of warm, kind, smiley girls. (I can't imagine why they are in the hospital -- they seem so happy!)
Today when Lars and I entered Ben's room we noticed a card on his bedside table. It read: "GET WELL BENJY!!!!!" (He has a cold.) Inside were the signatures of every patient on the unit.
Who made this card, Ben?" I asked.
"Oh, Jenna," he said. I wasn't sure which of the two is Jenna, but I knew she was one of the dynamic duo.
"How nice," said Lars.
A look of panic crossed Ben's face. "She likes me. No, LIKES me."
I tried not to smile. "How do you know?"
"She said, 'Benjy, don't tell anyone but I like you. As in, crush.'"
"Oh," I said, looking at my shoes. I caught Lars's grin out of the corner of my eye.
"It made me want to throw up."
"Oh, Ben..." said Lars.
"Not in a bad way! I just -- I don't feel ready for this!"
It was so cute I almost died.
"Don't worry, sweetheart," I said, stroking his curly head. "You don't have to be ready. Just enjoy the fact that she's a nice, sweet girl, who wants to be friends."
"It's starting," Lars said to me as we walked to our car a few minutes later. And he squeezed my hand.
Thursday, December 27, 2012
Wednesday, December 26, 2012
Astonishing Acts of Heartwarming Kindness
Yesterday was Christmas, and a lot of kids were in hospitals all over this country. About ten, give or take a couple, were in Benjy's psychiatric unit. They must range in age from six to fifteen. They share a few burdens: sadness, emotional dysregulation, various psychiatric diagnoses. Some of them long to take their own lives.
Sometimes I walk onto Unit One and see them dotted around the day room, sitting isolated and downcast, even though there are several of them there together. They do not often seem to connect, at least not when I'm around. Occasionally I hear a laugh. Rarely, a conversation.
There is a jumble of Christmas decorations on one wall -- and some dreydls and menorahs as well, because a couple of weeks ago I had noticed there were none and asked for them, for Benjy's sake. When I arrive on the unit most days, Ben is sitting in a chair under the jumble, looking lost.
On Christmas morning Lars and I arrived to take him home on his pass. Most of the kids who had passes were already gone. Because we do not celebrate Christmas this was going to be a regular day -- a little sadder than most, perhaps, but not a day of celebration and gifts. We had done that, as best we could, for eight days earlier in the month.
Imagine our surprise and joy when we entered Benjy's room and saw crumpled gift wrap and three presents on the floor!
Unit One had not been forgotten. Even these children, the most marginalized of sick children (because mental illness does not excite the same sort of sympathy and generosity as, say, cancer, in many people) received gifts from strangers. People who imagined the pain of being six or ten or fourteen and in the hospital for Christmas.
Not only that, but a local restaurant donated meals -- it looked like about twenty of them there on the front desk -- for the staff working on Christmas Eve.
This is the kind of stuff that makes me cry. I did. I am.
And then I read THIS. You should read it, too.
You might have thought this county was dominated by the cruel and the heartless, by guns and anger, and not gifts.
If, like me, you did, I guess you were wrong.
Sometimes I walk onto Unit One and see them dotted around the day room, sitting isolated and downcast, even though there are several of them there together. They do not often seem to connect, at least not when I'm around. Occasionally I hear a laugh. Rarely, a conversation.
There is a jumble of Christmas decorations on one wall -- and some dreydls and menorahs as well, because a couple of weeks ago I had noticed there were none and asked for them, for Benjy's sake. When I arrive on the unit most days, Ben is sitting in a chair under the jumble, looking lost.
On Christmas morning Lars and I arrived to take him home on his pass. Most of the kids who had passes were already gone. Because we do not celebrate Christmas this was going to be a regular day -- a little sadder than most, perhaps, but not a day of celebration and gifts. We had done that, as best we could, for eight days earlier in the month.
Imagine our surprise and joy when we entered Benjy's room and saw crumpled gift wrap and three presents on the floor!
Unit One had not been forgotten. Even these children, the most marginalized of sick children (because mental illness does not excite the same sort of sympathy and generosity as, say, cancer, in many people) received gifts from strangers. People who imagined the pain of being six or ten or fourteen and in the hospital for Christmas.
Not only that, but a local restaurant donated meals -- it looked like about twenty of them there on the front desk -- for the staff working on Christmas Eve.
This is the kind of stuff that makes me cry. I did. I am.
And then I read THIS. You should read it, too.
You might have thought this county was dominated by the cruel and the heartless, by guns and anger, and not gifts.
If, like me, you did, I guess you were wrong.
Tuesday, December 25, 2012
Dinner at the Delaunay Diner
It was broiled salmon, roasted potatoes (left over from last night, truth be told), and honeyed carrots.
Lars liked it. The Hellacious Hound thought he would too, if given half a chance. He sat and gazed upwards at Lars, eyes the most eloquent brown, with just a bit of a white ring around them.
Melting eyes.
"Give him a little salmon," I urged.
Lars looked stern. "His kind is not served here."
"On the floor, then."
Lars raised his left eyebrow. "He has a bowl full of kibble. On the floor."
Hellacious tilted his head.
"Is your heart made of stone?"
"Granite."
I made a furtive hand gesture at the Hound. He noticed immediately and snaked between Lars's feet, popping up beside my plate. He gave me an intense stare. All of him quivered, even his fluff-ball tail.
"Get down," warned Lars.
I pushed him off. I knew if I fed him even a morsel of that salmon I'd get a lecture. A German lecture. Which is bound to be bad news. So I ate the salmon myself, under two reproachful canine eyes.
When Lars had scraped every last dried-on piece of salmon from the serving dish (I can't tell if this is a German or an idiosyncratic madness) he allowed me to place it before His Nibs.
His Nibs got right to work on what remained -- mostly butter. When he'd finished he leaped onto the couch and did his trademark wriggle into the pillows.
"Get your buttery snout out of that pillow!" thundered Lars. Up popped a doggish head. I whipped out my iPhone to take a picture but he always flees when I do that.
I have had "buttery snout" on the brain ever since dinner, so I thought I'd blog about it. Sorry there's no photographic evidence.
Lars liked it. The Hellacious Hound thought he would too, if given half a chance. He sat and gazed upwards at Lars, eyes the most eloquent brown, with just a bit of a white ring around them.
Melting eyes.
"Give him a little salmon," I urged.
Lars looked stern. "His kind is not served here."
"On the floor, then."
Lars raised his left eyebrow. "He has a bowl full of kibble. On the floor."
Hellacious tilted his head.
"Is your heart made of stone?"
"Granite."
I made a furtive hand gesture at the Hound. He noticed immediately and snaked between Lars's feet, popping up beside my plate. He gave me an intense stare. All of him quivered, even his fluff-ball tail.
"Get down," warned Lars.
I pushed him off. I knew if I fed him even a morsel of that salmon I'd get a lecture. A German lecture. Which is bound to be bad news. So I ate the salmon myself, under two reproachful canine eyes.
When Lars had scraped every last dried-on piece of salmon from the serving dish (I can't tell if this is a German or an idiosyncratic madness) he allowed me to place it before His Nibs.
His Nibs got right to work on what remained -- mostly butter. When he'd finished he leaped onto the couch and did his trademark wriggle into the pillows.
"Get your buttery snout out of that pillow!" thundered Lars. Up popped a doggish head. I whipped out my iPhone to take a picture but he always flees when I do that.
I have had "buttery snout" on the brain ever since dinner, so I thought I'd blog about it. Sorry there's no photographic evidence.
The Selfish Giant
I am needing help on this gray Christmas Day. Benjy, low on Lexapro, is crashing. Depressed, irritable, anxious. And that makes me unbearably sad.
He is agitating for release from the hospital.
"I'm well!" he argues bitterly. His mood is as dark as it gets. "There is nothing wrong with me."
Such difficulty seeing, he has.
I need help, and so I am turning to Oscar Wilde. Not the ironic, snarky Oscar. Not the too-clever-by-half chap, although I love him too (favorite line: "I hear her hair has turned quite gold from grief!" -- from The Importance of Being Earnest).
No. I am turning to the Oscar Wilde who makes me cry over the potential for sheer goodness in people -- or in giants, at any rate.
I am about to read this.
(It's a good allegory for Christmas, by the way.)
He is agitating for release from the hospital.
"I'm well!" he argues bitterly. His mood is as dark as it gets. "There is nothing wrong with me."
Such difficulty seeing, he has.
I need help, and so I am turning to Oscar Wilde. Not the ironic, snarky Oscar. Not the too-clever-by-half chap, although I love him too (favorite line: "I hear her hair has turned quite gold from grief!" -- from The Importance of Being Earnest).
No. I am turning to the Oscar Wilde who makes me cry over the potential for sheer goodness in people -- or in giants, at any rate.
I am about to read this.
(It's a good allegory for Christmas, by the way.)
Monday, December 24, 2012
Froehliche Weihnachten
That, yeah. And Merry Christmas.
This is Christmas in Tecklenburg, Germany, where Lars comes from. Christmas in Boston is beautiful, too.
Kind of makes you wish you celebrated it. But Chanukah's pretty nice, too.
Whatever you celebrate, enjoy!
This is Christmas in Tecklenburg, Germany, where Lars comes from. Christmas in Boston is beautiful, too.
Kind of makes you wish you celebrated it. But Chanukah's pretty nice, too.
Whatever you celebrate, enjoy!
Still In
It's a good thing we don't celebrate Christmas, because Benjy will spend at least part of it in the hospital. Just like he did Chanukah. We thought he'd have been sprung by now, but his dysregulation clings tenaciously to him. So every day I drive to the hospital, take him on his school pass, when there is school, and then home for a few hours before driving him back to Unit One.
These days he is home for eight hours a day but sleeps away, his cocktail of meds -- and his mental state -- still in flux.
We had no idea just how unquiet Benjy's mind is, until he burst forth at a meeting with his psychiatrist and case manager and me, and told us so. A chaos of thoughts zigging and zagging through his brain, jibs and jabs of scenes, words, parts of his day. Truncated thoughts of people he loves and people he hates. Songs and video games and notions that are dark and off-kilter.
Then there are the pictures of things. "Messed up," he calls them. A car, bent in the middle, Dali-esque. A pencil curved, not straight and true as pencils in this world are. I ask him if he imagines people in this distorted way.
Yes, he says. I do.
For how long have you? I ask with dread.
Forever.
I wonder how, in his mind's eye, he pictures me. I think I will not ask.
This distorted thinking does not appear to be psychosis in the usual sense. These are not bent cars motoring down Commonwealth Avenue. They are cars recollected in tranquility, as Wordsworth said (but not about cars).
It is the entropy in Benjy's head that makes the world too much for him. That makes school a torture, and video games an oasis (gaming is the only pursuit that seems to quiet the chaos for a while, although his doctor has told me that it may, in a heartbreaking vicious circle, also be exacerbating the problem).
So we will have to wait and see what happens. If the chaos in his head is a feature of mania, then the Lexapro he 's been maxxed out on for a couple of years is making things worse. If it's a matter of OCD, then it will get worse when the Lexapro is reduced. Right now he's down five milligrams and seems to be doing better -- he talked to me, in a lively way, when I picked him up from school on Friday. Taught me some new stuff. That hasn't happened in eons. And he told me about Hawaii, how it was formed and how it was found. He'd learned it in school just that day. He hadn't learned anything at school for along time, but on Friday, for the first time since last spring at least, the teacher's voice found a point of entry, spoke louder than the rogue thoughts raging in his brain.
Of course, we all have brains prone to restlessness, and pone to occasional disorder. My own dreams, last night, took my breath away with their audacity.
Dogs hanging from trees, my own dream-puppy, whose name I cannot get straight -- Maeve? Maude? Gretchen? -- running away from me, always fleeing, leash trailing, leaving me behind in my desperate, seeking despair. "Come back, Maeve/Maude/Gretchen!" I scream, but she is only a diminishing point of desire, smaller, smaller, and then altogether gone.
I woke up from that one feeling wretched. But in an hour or so I will pick up Benjy; that is my consolation.
These days he is home for eight hours a day but sleeps away, his cocktail of meds -- and his mental state -- still in flux.
We had no idea just how unquiet Benjy's mind is, until he burst forth at a meeting with his psychiatrist and case manager and me, and told us so. A chaos of thoughts zigging and zagging through his brain, jibs and jabs of scenes, words, parts of his day. Truncated thoughts of people he loves and people he hates. Songs and video games and notions that are dark and off-kilter.
Then there are the pictures of things. "Messed up," he calls them. A car, bent in the middle, Dali-esque. A pencil curved, not straight and true as pencils in this world are. I ask him if he imagines people in this distorted way.
Yes, he says. I do.
For how long have you? I ask with dread.
Forever.
I wonder how, in his mind's eye, he pictures me. I think I will not ask.
This distorted thinking does not appear to be psychosis in the usual sense. These are not bent cars motoring down Commonwealth Avenue. They are cars recollected in tranquility, as Wordsworth said (but not about cars).
It is the entropy in Benjy's head that makes the world too much for him. That makes school a torture, and video games an oasis (gaming is the only pursuit that seems to quiet the chaos for a while, although his doctor has told me that it may, in a heartbreaking vicious circle, also be exacerbating the problem).
So we will have to wait and see what happens. If the chaos in his head is a feature of mania, then the Lexapro he 's been maxxed out on for a couple of years is making things worse. If it's a matter of OCD, then it will get worse when the Lexapro is reduced. Right now he's down five milligrams and seems to be doing better -- he talked to me, in a lively way, when I picked him up from school on Friday. Taught me some new stuff. That hasn't happened in eons. And he told me about Hawaii, how it was formed and how it was found. He'd learned it in school just that day. He hadn't learned anything at school for along time, but on Friday, for the first time since last spring at least, the teacher's voice found a point of entry, spoke louder than the rogue thoughts raging in his brain.
Of course, we all have brains prone to restlessness, and pone to occasional disorder. My own dreams, last night, took my breath away with their audacity.
Dogs hanging from trees, my own dream-puppy, whose name I cannot get straight -- Maeve? Maude? Gretchen? -- running away from me, always fleeing, leash trailing, leaving me behind in my desperate, seeking despair. "Come back, Maeve/Maude/Gretchen!" I scream, but she is only a diminishing point of desire, smaller, smaller, and then altogether gone.
I woke up from that one feeling wretched. But in an hour or so I will pick up Benjy; that is my consolation.
Tuesday, December 18, 2012
It Is Coming
Shhh! Listen. Put your ear to the ground. It's starting again.
America is reinventing itself.
This is not the first time. After inventing itself as a nation, united, America reinvented itself as a nation in which all live free. And quite a while after that it reinvented itself as a nation in which all citizens, people of every shade, both genders, and all religions, have (more or less) equal rights.
There were and are all kinds of movements here. Civil rights. Women's rights. The anti-war and anti-nuke movements. LGBT rights. Occupy Wall Street. To name just a few.
A while back, though, I noticed that America was different. Not the place I thought I knew. Civil discourse had become less civil. Greed had blossomed. "Values" had accrued a certain meaning that was foreign to me, that was about exclusion, suppression. People valued stuff, stuff, and more stuff. Venerated wealth. Ignored suffering. They seemed to be willing to throw the most vulnerable among us under the bus.
The day a business student in my freshman English class proclaimed, "Poor people don't need heat. People lived without it in the nineteenth century; why should we worry about people who can't afford it now?" I truly thought we had hit rock bottom.
His was the face of the future, and it was not pretty.
For the past ten years or so I lamented the way our country was tilting. Sometimes I looked at real estate listings in Canada, in Germany, in Australia. I did not take these virtual forays into foreign lands lightly. I did not really want to go. I just couldn't see a place for myself in the country America was becoming.
I was not rich, I was not greedy, and I was not cruel. I was a woman who believed in the integrity of her own body, and in the bodies of all others. Who thought everyone deserved to worship freely in their own way -- or not at all -- but not in public spaces. I delighted in the love, and the romance, and the commitment we, as humans, are capable of feeling for each other. It did not matter to me the arrangement of genitalia in couples who loved each other; the love itself was enough.
The laws in my country did not always protect what I cherished. The values of those in prominent positions -- those who make and enforce laws, for example, and those who control what people earn and what is available for them to eat -- were not my values.
So I slipped into intermittent despair. The election season was an agony -- it brought the divisions here in America into stark relief. It brought out the worst in some people, and in others it brought out the best. The whole country was stressed and humming with repressed anger, with anguish and passion. From Maine to California, we were quivering.
One day I put my ear to the ground and I heard the rumbling. Voices emerging, blending, growing louder and stronger. I heard them on Facebook and Twitter and in the blogosphere. In coffee shops and magazines (the ones I read, anyway) and at dinners with friends. They were earnest voices, and urgent. And on November 6th they enunciated clearly. They are still speaking. Do you hear them?
America is reinventing itself again, and I am awash with anticipation. A majority of us are tired of this government by the few for the few. We care about the poor with no heat, about the disabled and dispossessed. We see all human beings as equal -- citizens, people without papers, children. But we do not believe that corporations are equal, of that I can assure you.
And now, after a tragedy of immense proportion, a tragedy that has rendered many of us unable to work, to think, to stop wringing our hands over what things have come to, it looks likely that America will divorce its guns. Maybe not all of them. Certainly the ones that exist solely for the purpose of wholesale slaughter.
It even looks like The Gentlemen of Congress are standing up, a few at a time. They are discovering their moral compasses. Divorcing the NRA. Not all of them, but if we are lucky, enough of them.
I am a little scared. Change is good, but does not always come easily. It is coming, though, that seems clear enough. And I am waiting with open arms.
America is reinventing itself.
This is not the first time. After inventing itself as a nation, united, America reinvented itself as a nation in which all live free. And quite a while after that it reinvented itself as a nation in which all citizens, people of every shade, both genders, and all religions, have (more or less) equal rights.
There were and are all kinds of movements here. Civil rights. Women's rights. The anti-war and anti-nuke movements. LGBT rights. Occupy Wall Street. To name just a few.
A while back, though, I noticed that America was different. Not the place I thought I knew. Civil discourse had become less civil. Greed had blossomed. "Values" had accrued a certain meaning that was foreign to me, that was about exclusion, suppression. People valued stuff, stuff, and more stuff. Venerated wealth. Ignored suffering. They seemed to be willing to throw the most vulnerable among us under the bus.
The day a business student in my freshman English class proclaimed, "Poor people don't need heat. People lived without it in the nineteenth century; why should we worry about people who can't afford it now?" I truly thought we had hit rock bottom.
His was the face of the future, and it was not pretty.
For the past ten years or so I lamented the way our country was tilting. Sometimes I looked at real estate listings in Canada, in Germany, in Australia. I did not take these virtual forays into foreign lands lightly. I did not really want to go. I just couldn't see a place for myself in the country America was becoming.
I was not rich, I was not greedy, and I was not cruel. I was a woman who believed in the integrity of her own body, and in the bodies of all others. Who thought everyone deserved to worship freely in their own way -- or not at all -- but not in public spaces. I delighted in the love, and the romance, and the commitment we, as humans, are capable of feeling for each other. It did not matter to me the arrangement of genitalia in couples who loved each other; the love itself was enough.
The laws in my country did not always protect what I cherished. The values of those in prominent positions -- those who make and enforce laws, for example, and those who control what people earn and what is available for them to eat -- were not my values.
So I slipped into intermittent despair. The election season was an agony -- it brought the divisions here in America into stark relief. It brought out the worst in some people, and in others it brought out the best. The whole country was stressed and humming with repressed anger, with anguish and passion. From Maine to California, we were quivering.
One day I put my ear to the ground and I heard the rumbling. Voices emerging, blending, growing louder and stronger. I heard them on Facebook and Twitter and in the blogosphere. In coffee shops and magazines (the ones I read, anyway) and at dinners with friends. They were earnest voices, and urgent. And on November 6th they enunciated clearly. They are still speaking. Do you hear them?
America is reinventing itself again, and I am awash with anticipation. A majority of us are tired of this government by the few for the few. We care about the poor with no heat, about the disabled and dispossessed. We see all human beings as equal -- citizens, people without papers, children. But we do not believe that corporations are equal, of that I can assure you.
And now, after a tragedy of immense proportion, a tragedy that has rendered many of us unable to work, to think, to stop wringing our hands over what things have come to, it looks likely that America will divorce its guns. Maybe not all of them. Certainly the ones that exist solely for the purpose of wholesale slaughter.
It even looks like The Gentlemen of Congress are standing up, a few at a time. They are discovering their moral compasses. Divorcing the NRA. Not all of them, but if we are lucky, enough of them.
I am a little scared. Change is good, but does not always come easily. It is coming, though, that seems clear enough. And I am waiting with open arms.
Monday, December 17, 2012
What We Fear Most
After urging the Gentlemen In Congress to STAND UP earlier today, I sat around in my jammies, drinking coffee and watching the heartwrenching CNN reporting from Newtown. I ate some of Lars's Famous German Potato Salad. When time was running out before I had to pick Benjy up at school I took a belated shower.
I did not do any work on the essay I'd planned to write today. I made no medical appointments, bought no groceries, cleaned no kitchens, and walked no Hellacious Hounds. (I did take one out for a quick pee during a commercial break, but that was the extent of my dog-walkery.)
What I did was, I thought. And here is what I figured out:
When my sister was dying of breast cancer at age 36, I did not blame her for it. I was not angry that she would soon leave some young children, a husband, and a lot of other people who loved her behind. And no one else was, either. We were sad, of course, but not angry. Because everyone understood that her cells had gone haywire, that her body had betrayed her. Everyone knew she would have preferred to see her children grow up.
Even when I could not bear to look at her bald and wasted body, I did not shun her. No one did. She was helpless in the face of her body's disease and disorder.
When I encounter a person with a prosthetic limb, I do not blame that person for his or her loss. I do not feel shame for them, nor do I think they should feel shame.
A person with heart disease does not seem culpable in my eyes, nor in the eyes of most others.
It's true that when I was a young girl with Tourette's, and I had my assortment of oddball tics, I was ashamed, thought myself a lesser person, not worthy of friendship or respect, because other people seemed to think so. I don't feel that way anymore but perhaps others do. Because Tourette's is maybe a little scary. It's not necessarily recognizable, the way cancer or diabetes are, and it is also a very, very public disability.
But no one who has it chose it, that I can assure you.
Like Tourette's, mental illness is scary. It makes people uncomfortable. It makes them want to look away.
Not only that, but it is often mysterious. Where did those voices in Aunt Gertrude's head come from, anyway? Why is Jack so deeply depressed? No one in the family has ever been so depressed, at least not that we know of.
Then there is the problem of treatment. Oh, you broke your leg? The orthopedist knows just what to do, how long you will need to wear the cast, and when you will be walking normally again. If he doesn't, he can come pretty darn close.
Oh, you have gout? Here's how we treat that. Here's what you ought not to eat. If you dine like a Victorian gentleman your sore foot will get worse, of this we can be sure.
But what about the kid who sneaks off into the basement and cuts herself? Who bangs his head against the wall? What about the kid who sits with her head on her desk all day long at school? Who cannot stray more than a block beyond his house?
Sure, there are medications for these things. There is therapy and psychiatry. Often they work, and sometimes they don't. Sometimes mental ailments go away and come back again. And this is hard to understand, especially for a nation of people who like quick fixes. Who do not do well in the gray areas of life.
If you are not accustomed to seeing a person with waxing psychosis you are probably going to want to walk the other way, fast. You will not want to look too closely at that person.
But here's the thing: we HAVE to look. We have to begin to understand.
If you are not ashamed of your mitral valve prolapse, your slight hearing loss, your endometriosis, then why should I be ashamed of my Tourette's? And why should anyone be ashamed of -- or blamed for -- their mental illness?
It's because most of us don't understand it that mental illness is stigmatized, underfunded. That the (probably large) segment of our population who suffers from some sort of mental health disorder is underserved.
This much I know is true: Benjy is as much to blame for his depression/anxiety/mood swings/etc. as my sister was for her cancer. Which is to say, not at all.
A discussion has begun. I see it taking root on the internet. In blogs and on Twitter and Facebook. People are beginning to speak out about mental health. Some of those people are angry about what seems like a lot of mentally ill men with machine guns. I am angry about that, too. Not about the mental illness, but about the guns and the fact that these young men have slipped through some very big cracks.
Let the conversation continue! And for god's sake, DON'T TURN AWAY.
I did not do any work on the essay I'd planned to write today. I made no medical appointments, bought no groceries, cleaned no kitchens, and walked no Hellacious Hounds. (I did take one out for a quick pee during a commercial break, but that was the extent of my dog-walkery.)
What I did was, I thought. And here is what I figured out:
When my sister was dying of breast cancer at age 36, I did not blame her for it. I was not angry that she would soon leave some young children, a husband, and a lot of other people who loved her behind. And no one else was, either. We were sad, of course, but not angry. Because everyone understood that her cells had gone haywire, that her body had betrayed her. Everyone knew she would have preferred to see her children grow up.
Even when I could not bear to look at her bald and wasted body, I did not shun her. No one did. She was helpless in the face of her body's disease and disorder.
When I encounter a person with a prosthetic limb, I do not blame that person for his or her loss. I do not feel shame for them, nor do I think they should feel shame.
A person with heart disease does not seem culpable in my eyes, nor in the eyes of most others.
It's true that when I was a young girl with Tourette's, and I had my assortment of oddball tics, I was ashamed, thought myself a lesser person, not worthy of friendship or respect, because other people seemed to think so. I don't feel that way anymore but perhaps others do. Because Tourette's is maybe a little scary. It's not necessarily recognizable, the way cancer or diabetes are, and it is also a very, very public disability.
But no one who has it chose it, that I can assure you.
Like Tourette's, mental illness is scary. It makes people uncomfortable. It makes them want to look away.
Not only that, but it is often mysterious. Where did those voices in Aunt Gertrude's head come from, anyway? Why is Jack so deeply depressed? No one in the family has ever been so depressed, at least not that we know of.
Then there is the problem of treatment. Oh, you broke your leg? The orthopedist knows just what to do, how long you will need to wear the cast, and when you will be walking normally again. If he doesn't, he can come pretty darn close.
Oh, you have gout? Here's how we treat that. Here's what you ought not to eat. If you dine like a Victorian gentleman your sore foot will get worse, of this we can be sure.
But what about the kid who sneaks off into the basement and cuts herself? Who bangs his head against the wall? What about the kid who sits with her head on her desk all day long at school? Who cannot stray more than a block beyond his house?
Sure, there are medications for these things. There is therapy and psychiatry. Often they work, and sometimes they don't. Sometimes mental ailments go away and come back again. And this is hard to understand, especially for a nation of people who like quick fixes. Who do not do well in the gray areas of life.
If you are not accustomed to seeing a person with waxing psychosis you are probably going to want to walk the other way, fast. You will not want to look too closely at that person.
But here's the thing: we HAVE to look. We have to begin to understand.
If you are not ashamed of your mitral valve prolapse, your slight hearing loss, your endometriosis, then why should I be ashamed of my Tourette's? And why should anyone be ashamed of -- or blamed for -- their mental illness?
It's because most of us don't understand it that mental illness is stigmatized, underfunded. That the (probably large) segment of our population who suffers from some sort of mental health disorder is underserved.
This much I know is true: Benjy is as much to blame for his depression/anxiety/mood swings/etc. as my sister was for her cancer. Which is to say, not at all.
A discussion has begun. I see it taking root on the internet. In blogs and on Twitter and Facebook. People are beginning to speak out about mental health. Some of those people are angry about what seems like a lot of mentally ill men with machine guns. I am angry about that, too. Not about the mental illness, but about the guns and the fact that these young men have slipped through some very big cracks.
Let the conversation continue! And for god's sake, DON'T TURN AWAY.
Stand Up, Gentlemen
I wrote and rewrote this post in my head on my way home from taking Benjy to school on a six-hour school pass today. He is close to being discharged from his fourth psychiatric hospitalization in three years. He is in many ways a broken boy. His wiring can be faulty. He is sometimes sick and sometimes well. He is a beloved, and a loving boy. Empathetic. Generous. Kind. And when he is dysregulated, despairing and self-loathing. Full of darkness.
I love him as much as any of you love your children. He is my sun and my moon. So is Saskia. I truly feel I won the kid lottery.
And yet. What happened on Friday in Connecticut is tearing me up inside. Not only because too many beautiful, way-too-young people came to a violent end. Not only because a young man who must have been suffering in ways that Benjy may have sometimes suffered committed an atrocity.
Those things are unbearable. But so are some other things.
The assumptions flying around -- for example, that people with autism (because the shooter is thought by some to have had Asperger's) are likely to do such things. (Not so!)
Our country's woefully inadequate approach to supporting, and even acknowledging, issues of mental health.
Our inattention.
Did you know that my own family is now fearful about Benjy, about the video games he plays, about his maladjustments, his diagnoses, which seem suddenly extremely threatening? I love my family -- they are the best -- but right now I am angry and hurt by their assumptions.
They forget that Benjy is the boy who burst into tears in a medical waiting room because he was thinking about the families of fallen soldiers and the losses they must bear. Out of the blue, he started sobbing. The boy who worries about other kids when they are not doing well. Who spent some of his own birthday money to buy a gift for a boy at his school who has autism, and whom Benjy perceived as not having many friends. He said, "Can we buy something for A-- that he would like, a book or a calendar with nice pictures? I want to make him happy."
This is not a person who is likely to get his hands on an AK-47 and shoot up a school.
Here's another thought: Adam Lanza's parents were not paying attention. Not the way I pay attention to Benjy, the way so many other parents pay attention to their kids. If they were, there would not have been an arsenal of weapons in that house.
I will not ever apologize for making that statement. If it sounds like I'm blaming the mother, who was also a victim of her son's rampage, I am.
I know within moments if Benjy is breaking down. I hear it in his voice. Read it in his face, his body. And then I get him help. I have sacrificed a career and relative financial stability for him. I drive him all the hell around the Boston area, every week, to get him the help he needs. I have advocated for him and hired others to do so when I could not. Not because I'm a martyr or a hero.
But because I am paying attention.
And here is another thing: We are ALL Benjy's and Lanza's and Lochner's and Holmes's parents. I am and you are and so is that guy and so is that woman. We all have a responsibility to not turn away. To advocate for our fellow citizens who need mental health resources. We should insist that some of our tax dollars go to mental health research and services. At the same time, we should not make assumptions about people with psychiatric disorders. We all know someone with one -- I guarantee it. You may not know you do, but you do.
WE SHOULD NOT BE INATTENTIVE.
And here is the last thing I am going to say:
GUNS.
It is not enough to address the problems of mental health disorders in this country. Some of the people who commit these mass shootings may not even be mentally ill.
In fact, you know what the common denominator really is?
White males. Think about it.
Speaking of white males, a lot of the white males who still dominate our government have no moral courage. They are in this game for self-gain. The safety of six-year-old children, like those who were murdered on Friday, means less to them than the safety of their own jobs.
Why else would they fail to stand up to the gun lobby's bullying?
STAND UP, GENTLEMEN.
Why would they keep insisting that ALL guns be readily available to anyone who wants them?
STAND UP, GENTLEMEN.
Why would they believe that it is a matter of right that one be able to legally own and carry a weapon whose SOLE PURPOSE is to kill as many people as possible, as quickly as possible?
STAND UP, GENTLEMEN.
A lot of these gun proponents are men who campaign on "moral" issues. This is not the time to debate their other moral failures. The issue at hand is GUNS.
STAND UP, GENTLEMEN. Like the women at Sandy Hook who gave their lives -- their LIVES -- to protect the children you refuse to protect because you may lose your job.
SHAME, GENTLEMEN.
STAND UP. DO IT TODAY.
I love him as much as any of you love your children. He is my sun and my moon. So is Saskia. I truly feel I won the kid lottery.
And yet. What happened on Friday in Connecticut is tearing me up inside. Not only because too many beautiful, way-too-young people came to a violent end. Not only because a young man who must have been suffering in ways that Benjy may have sometimes suffered committed an atrocity.
Those things are unbearable. But so are some other things.
The assumptions flying around -- for example, that people with autism (because the shooter is thought by some to have had Asperger's) are likely to do such things. (Not so!)
Our country's woefully inadequate approach to supporting, and even acknowledging, issues of mental health.
Our inattention.
Did you know that my own family is now fearful about Benjy, about the video games he plays, about his maladjustments, his diagnoses, which seem suddenly extremely threatening? I love my family -- they are the best -- but right now I am angry and hurt by their assumptions.
They forget that Benjy is the boy who burst into tears in a medical waiting room because he was thinking about the families of fallen soldiers and the losses they must bear. Out of the blue, he started sobbing. The boy who worries about other kids when they are not doing well. Who spent some of his own birthday money to buy a gift for a boy at his school who has autism, and whom Benjy perceived as not having many friends. He said, "Can we buy something for A-- that he would like, a book or a calendar with nice pictures? I want to make him happy."
This is not a person who is likely to get his hands on an AK-47 and shoot up a school.
Here's another thought: Adam Lanza's parents were not paying attention. Not the way I pay attention to Benjy, the way so many other parents pay attention to their kids. If they were, there would not have been an arsenal of weapons in that house.
I will not ever apologize for making that statement. If it sounds like I'm blaming the mother, who was also a victim of her son's rampage, I am.
I know within moments if Benjy is breaking down. I hear it in his voice. Read it in his face, his body. And then I get him help. I have sacrificed a career and relative financial stability for him. I drive him all the hell around the Boston area, every week, to get him the help he needs. I have advocated for him and hired others to do so when I could not. Not because I'm a martyr or a hero.
But because I am paying attention.
And here is another thing: We are ALL Benjy's and Lanza's and Lochner's and Holmes's parents. I am and you are and so is that guy and so is that woman. We all have a responsibility to not turn away. To advocate for our fellow citizens who need mental health resources. We should insist that some of our tax dollars go to mental health research and services. At the same time, we should not make assumptions about people with psychiatric disorders. We all know someone with one -- I guarantee it. You may not know you do, but you do.
WE SHOULD NOT BE INATTENTIVE.
And here is the last thing I am going to say:
GUNS.
It is not enough to address the problems of mental health disorders in this country. Some of the people who commit these mass shootings may not even be mentally ill.
In fact, you know what the common denominator really is?
White males. Think about it.
Speaking of white males, a lot of the white males who still dominate our government have no moral courage. They are in this game for self-gain. The safety of six-year-old children, like those who were murdered on Friday, means less to them than the safety of their own jobs.
Why else would they fail to stand up to the gun lobby's bullying?
STAND UP, GENTLEMEN.
Why would they keep insisting that ALL guns be readily available to anyone who wants them?
STAND UP, GENTLEMEN.
Why would they believe that it is a matter of right that one be able to legally own and carry a weapon whose SOLE PURPOSE is to kill as many people as possible, as quickly as possible?
STAND UP, GENTLEMEN.
A lot of these gun proponents are men who campaign on "moral" issues. This is not the time to debate their other moral failures. The issue at hand is GUNS.
STAND UP, GENTLEMEN. Like the women at Sandy Hook who gave their lives -- their LIVES -- to protect the children you refuse to protect because you may lose your job.
SHAME, GENTLEMEN.
STAND UP. DO IT TODAY.
Thursday, December 13, 2012
Tuesday, December 11, 2012
A Violation of My Own Credo
It's funny how our moods can change. If we have relatively good mental health those mood changes may swing gently and only occasionally -- happy in the morning, slightly melancholy in the evening, no big deal -- but however they manifest they are patently human.
Last night I was feeling pretty good. Goofing on Lars, writing a little, feeling the afterglow of Benjy's (brief) presence in the house. This morning I'm feeling lonely and sad.
I think the problem is that I have violated my own credo. If you've been reading this blog since its inception you might remember it: One Day At a Time. Sometimes, One Hour At a Time. When you have a kid as wonderful and as impaired as mine, you cannot think too deeply about the future if you want to sleep at night and function during the day.
The phone call from Ben at 8 this morning got me wondering what's to come.
He asked me to get him and bring him home for his four-hour pass right after dropping Saskia off at school. I suspect the anticipation of my saying yes was what got him out of bed so early.
I told him no, and it did not go over well.
The reason I said no was because daytime hours at the hospital are for "school" (such as it is, a classroom for a motley collection of struggling kids -- pretty lightweight stuff) and group therapy. At 3:30 that's all done, and that was when I was planning to pick him up.
I told him that if he does not show the doctor he can handle school and groups the doctor will not find him ready to be released.
He told me he wanted more time in the afternoon with his hospital friends. I wasn't buying it.
"Oh, mom," Benjy said, his voice quavering, "Please. Just this once. I am SO stressed. Just please."
This broke my heart. I told him I would consult with his case manager when she finished with rounds at 11, but I am determined to hold firm.
And here's what troubles me. How on earth is he going to manage ANYTHING in life if he cannot manage the lowest-pressure stuff that is not simply sitting on the couch playing video games? His home pass yesterday was the first pass he could complete, because he got to be in his comfort zone -- on the living room couch. (His other comfort zone is his bed.)
The times we have taken him on 3-hour community passes he's lasted an hour and a half tops before wanting to go back to the hospital. He simply cannot handle being out in the world, even with me.
When he's out and about he yearns for the hospital. When he's at the hospital he years for home. When he's home he is restless and dissatisfied with what he has available to him. He is always seeking some other plane of existence, some more and better stuff to do, animals to own, food to eat.
He lives in a constant state of restless desire. This breaks my heart.
His doctor thinks this is mania, and that the mania is caused by his meds, which are currently being tweaked.
I think I've seen this stuff before, that we may be adding yet another diagnosis to the many he already owns. And when I think about what is to come I want to cry. I don't know if he will ever find a comfortable place in life beyond our living room couch (and even that does not fill his void). I want so much more for him -- and for the rest of us. I am searching too, always searching for the thing that will make Benjy whole. This has become my vocation, my quest.
And right now it has become my sorrow. It's a lonely endeavor, ever-searching and coming up dry. Benjy must know all about that loneliness. How sad I am for him.
Somebody please remind my of my credo. One. Day. At. A. Time.
Last night I was feeling pretty good. Goofing on Lars, writing a little, feeling the afterglow of Benjy's (brief) presence in the house. This morning I'm feeling lonely and sad.
I think the problem is that I have violated my own credo. If you've been reading this blog since its inception you might remember it: One Day At a Time. Sometimes, One Hour At a Time. When you have a kid as wonderful and as impaired as mine, you cannot think too deeply about the future if you want to sleep at night and function during the day.
The phone call from Ben at 8 this morning got me wondering what's to come.
He asked me to get him and bring him home for his four-hour pass right after dropping Saskia off at school. I suspect the anticipation of my saying yes was what got him out of bed so early.
I told him no, and it did not go over well.
The reason I said no was because daytime hours at the hospital are for "school" (such as it is, a classroom for a motley collection of struggling kids -- pretty lightweight stuff) and group therapy. At 3:30 that's all done, and that was when I was planning to pick him up.
I told him that if he does not show the doctor he can handle school and groups the doctor will not find him ready to be released.
He told me he wanted more time in the afternoon with his hospital friends. I wasn't buying it.
"Oh, mom," Benjy said, his voice quavering, "Please. Just this once. I am SO stressed. Just please."
This broke my heart. I told him I would consult with his case manager when she finished with rounds at 11, but I am determined to hold firm.
And here's what troubles me. How on earth is he going to manage ANYTHING in life if he cannot manage the lowest-pressure stuff that is not simply sitting on the couch playing video games? His home pass yesterday was the first pass he could complete, because he got to be in his comfort zone -- on the living room couch. (His other comfort zone is his bed.)
The times we have taken him on 3-hour community passes he's lasted an hour and a half tops before wanting to go back to the hospital. He simply cannot handle being out in the world, even with me.
When he's out and about he yearns for the hospital. When he's at the hospital he years for home. When he's home he is restless and dissatisfied with what he has available to him. He is always seeking some other plane of existence, some more and better stuff to do, animals to own, food to eat.
He lives in a constant state of restless desire. This breaks my heart.
His doctor thinks this is mania, and that the mania is caused by his meds, which are currently being tweaked.
I think I've seen this stuff before, that we may be adding yet another diagnosis to the many he already owns. And when I think about what is to come I want to cry. I don't know if he will ever find a comfortable place in life beyond our living room couch (and even that does not fill his void). I want so much more for him -- and for the rest of us. I am searching too, always searching for the thing that will make Benjy whole. This has become my vocation, my quest.
And right now it has become my sorrow. It's a lonely endeavor, ever-searching and coming up dry. Benjy must know all about that loneliness. How sad I am for him.
Somebody please remind my of my credo. One. Day. At. A. Time.
Monday, December 10, 2012
Gotta Love Lars
One of my favorite pastimes is making fun of Lars. I mean, the guy is eminently teasable. He wears socks n' Birkenstocks three seasons of the year. He's sitting in front of some football game or other wearing them as we speak, while pretending to do some work on his laptop. And I am about to laugh at him.
What?? Laughing is good for you. Didn't you see that Robin Williams movie about the clown-doctor? If red noses and big shoes can cure childhood diseases, then a pair of white socks and Birkenstocks, or a T-shirt worn inside out -- in public -- because Lars is not feeling kindly disposed toward the logo on said T-shirt, can probably heal leprosy.
I'm all for it, Larsie.
Anyway, tonight Lars returned from dropping Benjy back at the hospital -- yes, he had a four-hour home pass, and we got to eat dinner together!! -- feeling very smug. Very smug indeed. Saskia was trying to show me the trailer for the new Les Miz movie (and swooning over some actor dude she's in love with) and Lars just lifted his finger in the air with great pompousness and said:
"Turn that off. I have an important announcement to make."
"Oh, Geez," said Saskia. "What do YOU have to say?"
"Turn if off."
I nudged her. "Do what your father says," I told her, sounding very much like a 1950s housewife, and not liking it much.
She stopped the video. We looked at Lars expectantly and waited.
After a dramatic pause he said, "Anna, I just heard something VERY IMPORTANT on On Point [the NPR radio show]. And I think you need to hear about it."
"Okay, shoot."
"The World's Wisest Man is talking about Old Wives' Tales. Remember, this is the smartest man in the world."
This sounded suspicious to me but I pretended to believe him.
"Apart from you," I said.
"BETTER than me."
"Hokay."
"And this guy said that there is TRUTH to what I always tell you. That getting wet feet gives you a cold." He said this with such self-satisfaction I was reluctant -- at first -- to laugh at him. I got over that reluctance fast. I hooted.
"And can wet feet also give you a bladder infection? Y' know, like you always say? And a cool breeze over your lower back, can that give you a kidney infection? Because, you know, you gotta protect those kidneys."
I laughed some more. Because if there is one thing you need to know about me it's that I do not think highly of German ideas about illness.
My skepticism dates from the time we were in Germany with ten-month-old Saskia and she got tonsillitis. The family doctor we took her to told me in all seriousness that he was not surprised she'd come down with it because "red-haired children are more prone to tonsillitis." (Actually, they use the same word for tonsils and almonds in German so he may have been telling me that redheads are prone to sick almonds.)
Look, I LOVE Germans. I'm married to one. My bestie is German. My mother's family were German Jews, but that is something else. They were NORMAL. The German Germans I know are all lovely people but BARKING MAD.
So Lars is all proud of himself because his nutty ideas about wet feet have been confirmed by the Smartest Guy on Earth.
When I finished laughing I told him I still don't believe it.
"My cousins are doctors. My father's a dentist. I asked them. They said no."
"Then they are WRONG!" Lars crowed. He was feelin' good.
He totally cracks me up. He is simply too cute for words.
I love being married to a German. All that laughter is keeping me super healthy.
**Note to my German friends and Readers:
I really DO love you guys. And I will take any Ugly American comments you hurl back at me with good humor. I know I deserve it. Kuss u. Gruss, A--
What?? Laughing is good for you. Didn't you see that Robin Williams movie about the clown-doctor? If red noses and big shoes can cure childhood diseases, then a pair of white socks and Birkenstocks, or a T-shirt worn inside out -- in public -- because Lars is not feeling kindly disposed toward the logo on said T-shirt, can probably heal leprosy.
I'm all for it, Larsie.
Anyway, tonight Lars returned from dropping Benjy back at the hospital -- yes, he had a four-hour home pass, and we got to eat dinner together!! -- feeling very smug. Very smug indeed. Saskia was trying to show me the trailer for the new Les Miz movie (and swooning over some actor dude she's in love with) and Lars just lifted his finger in the air with great pompousness and said:
"Turn that off. I have an important announcement to make."
"Oh, Geez," said Saskia. "What do YOU have to say?"
"Turn if off."
I nudged her. "Do what your father says," I told her, sounding very much like a 1950s housewife, and not liking it much.
She stopped the video. We looked at Lars expectantly and waited.
After a dramatic pause he said, "Anna, I just heard something VERY IMPORTANT on On Point [the NPR radio show]. And I think you need to hear about it."
"Okay, shoot."
"The World's Wisest Man is talking about Old Wives' Tales. Remember, this is the smartest man in the world."
This sounded suspicious to me but I pretended to believe him.
"Apart from you," I said.
"BETTER than me."
"Hokay."
"And this guy said that there is TRUTH to what I always tell you. That getting wet feet gives you a cold." He said this with such self-satisfaction I was reluctant -- at first -- to laugh at him. I got over that reluctance fast. I hooted.
"And can wet feet also give you a bladder infection? Y' know, like you always say? And a cool breeze over your lower back, can that give you a kidney infection? Because, you know, you gotta protect those kidneys."
I laughed some more. Because if there is one thing you need to know about me it's that I do not think highly of German ideas about illness.
My skepticism dates from the time we were in Germany with ten-month-old Saskia and she got tonsillitis. The family doctor we took her to told me in all seriousness that he was not surprised she'd come down with it because "red-haired children are more prone to tonsillitis." (Actually, they use the same word for tonsils and almonds in German so he may have been telling me that redheads are prone to sick almonds.)
Look, I LOVE Germans. I'm married to one. My bestie is German. My mother's family were German Jews, but that is something else. They were NORMAL. The German Germans I know are all lovely people but BARKING MAD.
So Lars is all proud of himself because his nutty ideas about wet feet have been confirmed by the Smartest Guy on Earth.
When I finished laughing I told him I still don't believe it.
"My cousins are doctors. My father's a dentist. I asked them. They said no."
"Then they are WRONG!" Lars crowed. He was feelin' good.
He totally cracks me up. He is simply too cute for words.
I love being married to a German. All that laughter is keeping me super healthy.
**Note to my German friends and Readers:
I really DO love you guys. And I will take any Ugly American comments you hurl back at me with good humor. I know I deserve it. Kuss u. Gruss, A--
Saturday, December 8, 2012
Happy Hanukkah
This was the closest I could get to a menorah in the hospital. Benjy had fun putting it up on the window of his room. Tonight, Lars, Saskia, Benjy and I are going to our favorite delicatessen, Zaftig's, to celebrate Hanukkah and a performance Saskia is giving at the conservatory (unfortunately just for her classmates and faculty, not parents). Benjy has a three-hour pass to the outside world and we are going to make the most of it.
This year Hanukkah will be a little bit sad. But we are grateful that our family is intact, even if slightly scattered at the moment.
Happy Hanukkah to those of my Readers and friends who celebrate it!
Wednesday, December 5, 2012
Perspective
You know what's interesting? The way the conditions of your life can alter your perspective.
Ten years ago, if you'd told me my child would be in and out of psychiatric hospitals I'd had been appalled and aghast and scared as all get-out. I would have wept and prayed for something else, a different hand of cards -- and I am not a praying woman.
Now that it's happened that way, I'm just glad the hospital and its wonderful, caring staff exist. I'm glad when the next crisis arrives, Benjy will have a safe place to go, a place where he can heal. I am a bit sad that he won't be home for Hanukkah this year -- OK, very sad. And perplexed about what I can bring him (the electronic hang-man game I brought yesterday did not go over well. "Uh, we don't really like hang-man around here," the young woman who sits at the front desk told me).
Duh!
I did a bit of shopping the other day and picked up a 3-D puzzle of the Empire State Building for him. Cool, huh? But just now I noticed it's got a long point on the top. I don't know what it's made of but they'll NEVER let that thing on the unit. Lego kits work as long as they don't include little Lego guns.
You know what he really wants? I am not making this up. He really wants a bow and arrows.
Like that'll happen.
Even Benjy has an unusual perspective on the hospital. "You know," he told me at lunch today. "I may be coming back here. I don't know when, but it could happen."
"And how does that make you feel?" I asked him.
"I feel okay about it," he said. "Sometimes you just need a break, you know?"
Ten years ago, if you'd told me my child would be in and out of psychiatric hospitals I'd had been appalled and aghast and scared as all get-out. I would have wept and prayed for something else, a different hand of cards -- and I am not a praying woman.
Now that it's happened that way, I'm just glad the hospital and its wonderful, caring staff exist. I'm glad when the next crisis arrives, Benjy will have a safe place to go, a place where he can heal. I am a bit sad that he won't be home for Hanukkah this year -- OK, very sad. And perplexed about what I can bring him (the electronic hang-man game I brought yesterday did not go over well. "Uh, we don't really like hang-man around here," the young woman who sits at the front desk told me).
Duh!
I did a bit of shopping the other day and picked up a 3-D puzzle of the Empire State Building for him. Cool, huh? But just now I noticed it's got a long point on the top. I don't know what it's made of but they'll NEVER let that thing on the unit. Lego kits work as long as they don't include little Lego guns.
You know what he really wants? I am not making this up. He really wants a bow and arrows.
Like that'll happen.
Even Benjy has an unusual perspective on the hospital. "You know," he told me at lunch today. "I may be coming back here. I don't know when, but it could happen."
"And how does that make you feel?" I asked him.
"I feel okay about it," he said. "Sometimes you just need a break, you know?"
Tuesday, December 4, 2012
Another Encounter With My Glorious 47-Percenter
I saw her yesterday, at the hospital. I know now that her her name probably starts with an M. Benjy told me that, and he also told me she's very, very nice. "Isn't Mustang a wonderful name?" he said. "Like a car that is a thing of beauty."
I was walking down the corridor of Unit One with Ben and she emerged from the bathroom, mop in hand. She seemed suspended in another universe, dreamy, thinking about some delicious food or happy interlude. It was a moment before she saw us.
I smiled broadly and said hello. She smiled back. Her smile was warm and her lips a sort of sunny red. She wears make-up, I thought with surprise, and that small fact made her seem strong in my eyes. A Camilla among janitresses. She wears make-up and she cleans up after a posse of broken children, some of whom scream and try to kick down doors and some of whom make various sorts of unpleasant messes. The make-up tells me that she finds this a job worth doing, worth dressing up a little for -- and that she is brave enough to undertake it. I don't know if I would be so brave. Or that I would be able to maintain my dignity, as she does, in spite of the dirty toilets.
I did not see shadows lurking in her face, shades of the death and struggle and sadness I know are part of her life.
When she noticed Benjy she did a little dance with her mop. Waltzed it in a wide circle.
"You're back!" she said, as if this was something to celebrate -- not the illness but the presence of this young boy.
He nodded, held out his hand. She clasped it, drew it to her lips, and kissed it.
"Thank you," said Ben, who is polite even when taken aback. Although I don't think he was taken aback; I think he just went with it. For a child in a locked unit, anything is possible and much is impossible. You have to roll with the punches.
She looked at me. "So tall he is now," she said admiringly. "So big boy."
I agreed. "I didn't think we'd be back so soon," I said sadly.
"But I am glad to see my friend," she told us, and before I could answer she waved and turned away. There were more bathrooms to clean. More broken children who needed her smile.
What I do not ever see inscribed on Mustang's face, or hear in the tone of her voice, is bitterness. I think she expects nothing more than the chance to work, to make ends meet. To help her family with money, and with love. She is not afraid of hard work. Even though she is neither my sister nor my friend, I am so proud of that.
You can read the story of her family here, in my original post about the woman Ben calls Mustang.
I was walking down the corridor of Unit One with Ben and she emerged from the bathroom, mop in hand. She seemed suspended in another universe, dreamy, thinking about some delicious food or happy interlude. It was a moment before she saw us.
I smiled broadly and said hello. She smiled back. Her smile was warm and her lips a sort of sunny red. She wears make-up, I thought with surprise, and that small fact made her seem strong in my eyes. A Camilla among janitresses. She wears make-up and she cleans up after a posse of broken children, some of whom scream and try to kick down doors and some of whom make various sorts of unpleasant messes. The make-up tells me that she finds this a job worth doing, worth dressing up a little for -- and that she is brave enough to undertake it. I don't know if I would be so brave. Or that I would be able to maintain my dignity, as she does, in spite of the dirty toilets.
I did not see shadows lurking in her face, shades of the death and struggle and sadness I know are part of her life.
When she noticed Benjy she did a little dance with her mop. Waltzed it in a wide circle.
"You're back!" she said, as if this was something to celebrate -- not the illness but the presence of this young boy.
He nodded, held out his hand. She clasped it, drew it to her lips, and kissed it.
"Thank you," said Ben, who is polite even when taken aback. Although I don't think he was taken aback; I think he just went with it. For a child in a locked unit, anything is possible and much is impossible. You have to roll with the punches.
She looked at me. "So tall he is now," she said admiringly. "So big boy."
I agreed. "I didn't think we'd be back so soon," I said sadly.
"But I am glad to see my friend," she told us, and before I could answer she waved and turned away. There were more bathrooms to clean. More broken children who needed her smile.
What I do not ever see inscribed on Mustang's face, or hear in the tone of her voice, is bitterness. I think she expects nothing more than the chance to work, to make ends meet. To help her family with money, and with love. She is not afraid of hard work. Even though she is neither my sister nor my friend, I am so proud of that.
You can read the story of her family here, in my original post about the woman Ben calls Mustang.
Monday, December 3, 2012
Messy Lives
I am reading Katie Roiphe's In Praise of Messy Lives. I thought I didn't like her. Now I think I do.
I know the way lives, like kitchens and bedrooms and hair and makeup, can get messed up.
(Not the Delaunay kitchen. Ours is messier. And no marble -- not even faux -- anywhere.)
If any of you Readers has a life more messed up than mine I will give you a high five and maybe a gig as guest blogger here at The Nickel. Just let me know.
I know the way lives, like kitchens and bedrooms and hair and makeup, can get messed up.
(Not the Delaunay kitchen. Ours is messier. And no marble -- not even faux -- anywhere.)
If any of you Readers has a life more messed up than mine I will give you a high five and maybe a gig as guest blogger here at The Nickel. Just let me know.
A Rare and Ongoing Case of Speechlessness
Anyone who knows me knows I can talk. Oh, boy. When I have something to say, you're going to get an earful. Which is why I've been frustrated by my inability to post anything here for quite some time.
The problem is not that there's nothing to say. The problem is that I have all these words and emotions and fears and details swirling around my head and I can't tame them enough to set them down in print. I've sat down to blog a few times and given up because I haven't known how to start.
I think, finally, I've figured it out. The solution is:
And now I'm off to the hospital. I'll try to bring happier news very soon, Dear Readers.
The problem is not that there's nothing to say. The problem is that I have all these words and emotions and fears and details swirling around my head and I can't tame them enough to set them down in print. I've sat down to blog a few times and given up because I haven't known how to start.
I think, finally, I've figured it out. The solution is:
Bullet points.
Because any other way is going to hurt too damned much.
So, here goes (deep breath):
- Benjy's back in the hospital.
- It's two months after the last three-week stay
- I was scared for his safety and mine
- His grief was as vast and full as the ocean
- So was his rage
- He wanted a bird
- He has been obsessed with birds for a year
- He thinks a bird will make him happy and whole. I disagree.
- He hates me
- He loves me with a wild intensity
- He cannot function in this world right now
- I miss him more than I can speak or write
- He swings from despondent to joyous to flat in a day's time
- He may leave the hospital with yet another diagnosis (he has already, what, four? Five?)
- We live 1/4 mile from a TV tower and within 4 miles of many more
- A friend told me to do some reading
- We moved here in 2008
- Benjy has been hospitalized four times since 2009
- A perfectly healthy Saskia became quite sick in 2010, with some symptoms still unexplained and several diagnoses
- Some studies report that proximity to radio frequency waves can cause mental health disturbances as well as headaches, fatigue and malaise, immune system issues, and sleep disturbances
- We have all of these on the junior varsity team
- You could find other reasons for all of these illnesses (including "illnesses happen," and in Benjy's case, some of that stuff existed before we lived here, albeit in less intense forms)
- Ben's first psychiatric hospitalization was in 2009
- Saskia became sick in 2010
- In June of 2009, television signals in American were converted from analog to digital
And now I'm off to the hospital. I'll try to bring happier news very soon, Dear Readers.
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